Friday, July 26, 2013

The Truth, and Nothing But the ... Wait, What?: I'm having my head spun around this week by a couple of kids with fetal alcohol syndrome and the sort of fluid relationship they have with the truth. One I've caught in a relatively harmless lie, but it puts into question whether any of the stories she's told are real. (Many I would be happy to find out are not.) The other changes stories so quickly when challenged that it's impossible to know how to follow up -- I've sent him with instructions before to make something right only to find out there was never anything wrong. A fun thing about the "crazy lying" kids with FASD do is that, while their peers might lie to get themselves out of trouble for which they're responsible, these kids lie in a way that gets them into trouble they had nothing to do with, so it's impossible to know the right reaction. If I could be sure there was one cold hard truth I could get to with questioning, that would be great, but that particular ice cube has melted, and the kid holding it in his hand doesn't even remember what shape it used to have.

Monday, April 29, 2013

Blue-Light Special: I've definitely been reading too much give and take this month about Autism Awareness vs. Autism Acceptance, blue lights as awareness-raising vs. blue lights as a small ridiculous gesture, because when I saw the Disability Scoop headline Neighbors Clash Over Blue Light Supporting Autism this morning, I automatically thought it was an ideological clash between two families of children with autism who approached advocacy differently. But no, it was just a nitpicky neighbor thinking a blue light on the garage looked tacky. Maybe I need to lay off with the special-needs-news reading for a while.

Tuesday, April 23, 2013

Parenting Fail: Having one of those depressed days where I'm unsure whether I'm making the right choices for one of my kids, and wishing that the line between pushing too hard and not pushing hard enough was painted in neon and had flashing lights and arrows so you could find the dang thing. Especially for kids with FASD, it's just so hard to know whether apparent potential is real, and a worthwhile goal, or just a mirage to pursue at everyone's peril. Sigh. Tomorrow is another day, and fall is another semester.

Thursday, April 18, 2013

You Almost Have to Admire the Creativity:Earlier this week I wrote about spam on the Readers Respond forms on my About.com site, which appeared to be responses stolen from other spots on the Web and spam-botted around to new destinations. I'm getting a lot of spam blog comments, too, but those are different -- where the Readers Respond spam tries to sneak in looking like a legitimate entry, comment spam goes with flat-out flattery. Sad that the some of the nicest feedback I get on my work in a given week are these "Wow you are so brilliant why isn't everybody coming here and reading this" comments that just sort of sneak in the link for weight loss or Gucci bags or Viagra as if it was a small price to pay for such extravagant praise. Does this really work? Do bloggers not notice that that ten comments in a row on what a nice layout they have are bogus? Do they take at face value the requests to chat about how to combat spam by comments that are spam? Are they just so happy to get comments that aren't mean and nasty and fight-picking that they go ahead and let the false flattery stand? It's tempting.

Wednesday, April 17, 2013

The Benefit of the Doubt: Walking around my kids' college campus, it occurs to me that one seldom-praised advantage of modern technology for young people with developmental differences is the ability to talk on the phone through a low-profile earpiece. Not because kids like my son are doing that, but because now, if you walk around public places talking to yourself or your invisible friends in an animated fashion, there's at least a chance that you're having a legitimate chat with someone through a device not easily visible. That's a comfort to a parent, you know?

Tuesday, April 16, 2013

Thank You for Sharing: I've been getting an extraordinary amount of spam these days on the Readers Respond pages on my About.com site. These always appear to be entries legitimately made somewhere else and then picked up by a spam bot and tossed into other spaces just to see what sticks. It's kind of a weird sort of plagiarism -- apparently, any comment you leave anywhere might turn up anywhere else that no one's monitoring for spam. Sometimes they sort of fit the topic, more often they don't, always they have some telltale collection of alphabet letters in the "name" box so it's clearly not submitted by an actual human this time around, and generally I can plug the responses into Google and find those exact words in multiple spots on the Web. I kind of like spam better when it's a list of handbags of something that makes its intentions plain. Either way, though, it gets cut.

Monday, April 15, 2013

Too Close to the Tree: It's always interesting to see the nature and nurture of things with adopted kids, which aspects of their personalities you would swear were by genetic connection to yourself if you didn't know better. My daughter has "inherited" the same anxiety and obsessive worry that I got by blood from my own mother, and my son has clearly picked up the procrastination strain from my DNA even though he has none of the stuff. I'm in a position of telling her "don't worry" and telling him "just do it!" when my own personal ears are deaf to those words. Hypocritical much? Do as I say, youngsters.

(Speaking of distance from the tree: I requested a review copy of the interesting-sounding Far from the Tree, which looks at families of children with special needs and how they deal with their differences, to write about for my About.com site, and ... OMG, it's 976 pages and three pounds of book. If your book is going to be that big, you better be Stanley Greenspan telling me how to work with my child in very concrete and life-saving ways. Otherwise, for goodness sake, edit! I have this tome looming me over my workspace now, and I can't even imagine the kind of opening up of time that would need to occur for me to be able to sit down and give it a serious read. Maybe when my kids are out of college.)

Friday, January 11, 2013

Mama Bear Is Happy: Update on my question from yesterday -- Mama Bear did indeed blow her top around midafternoon, precipitating an e-mail to the professor, who replied this morning with the most excellent news that my son passed his test and class. I'll be leading Mama Bear back into her cave now and encouraging her to hibernate again. She's pretty excitable, though.

Thursday, January 10, 2013

College Self-Advocacy Etiquette Question: My son was given the opportunity to retake a final exam, in the college testing center, to try to pass it and with it the class. He did so last Thursday, a week ago today. His professor, to whom we are grateful for this chance, said he'd grade it and let him know by Tuesday how he did. Two days ago. No word. How soon is it okay to write a polite e-mail reminding/nagging the professor that this student is waiting to know his fate? Too soon, and I'd worry about ticking the prof off before he's graded the thing. Too late, and I'd worry he forgot all about it and the chance to pass the class would drift by. On the one hand, things will certainly resolve, and there's probably no real harm in waiting, and no basis to my worries. On the other hand, the suspense is freakin' killing us. What would you advise? I'm holding the Mama Bear aggressive advocacy impulses down for now, but pretty soon she's gonna blow.

Wednesday, January 09, 2013

Might Be Handy for IEP Meetings, Though: Last night, a link on the top of my gmail -- one of those advertising links that I usually ignore, but this time, could it really be what I think it is? -- led me to a website selling, God help us, bulletproof backpacks for kids. The idea, as explained in the sell copy, was that when your child starts hearing gunfire at school, he can grab the backpack and use it as a shield as he flees the building. Now, how that's supposed to work when most schools make kids keep their packs in their cubbies or lockers is not explained. I guess if you're going to send your child to school with an armor-plated bookbag, you'd get a dispensation from the administration to keep it near his desk at all times, so he can provide cover for his classmates as well. The backpack sells for $300, and it made me wonder how much it would cost to get, say, a child-sized bulletproof vest. You'd get a weighted vest for your child's proprioceptive needs and the illusion of protection, all in one.

Tuesday, January 08, 2013

Does It Come With a Free Professor to Explain It All?: It's time at our house for the semi-annual Buying of College Textbooks and Whining About the Cost. On the one hand, I kind of love the idea of getting our own copies of books without having to fight a school district for them, but at the same time, why on earth do they have to cost so much? One of my daughter's books, as I tweeted in amazement last night, was $223 for a new paperback. A hefty paperback, to be sure, with many valuable doorstop-like qualities, but a paperback nonetheless. In my day, boys and girls, overpriced college textbooks were hardcover! They'd break your back there in your bookbag, but you knew you were getting your money's worth! And even then, I don't think they were $223. Of course, I was in college so long ago that humans were still using shiny rocks for money, so who knows.

Fortunately, there are many options now for textbooks that in some ways reduce the cost. For the $223 tome, we also had a choice of buying used, renting new, or renting used. We went with the last, cheapest option, and will pay ninety-some dollars for the privilege of giving a dog-eared scribbled-on copy a home for four months. I still wonder, though, at the high prices. Is it just what the market will bear? Is there some extraordinary expense involved in creating textbooks? Do college bookstores mark them up hugely to pay the salary of the person who stands at the front door and makes you leave your purse in a cubbyhole? I know I could order from Amazon or other cheaper online sellers, but most of my kids' books have some sort of specific content for the college, so clearly they're onto that ploy. I just feel like we should get some sort of premium with our purchase -- an iPod, or a tutor.

Monday, January 07, 2013

The Lines We Draw: It's human nature, I think, to draw distinctions that keep us on the safe side of a situation. We look desperately for things that the unfortunate did differently so we can feel assured that their fate won't befall us. We try to keep our families safe by separating them from those we deem unsafe. We judge others to avoid having to judge ourselves.

Parents of kids with special needs sure know the feeling of being on the wrong sides of other people's lines. You can see that imagined boundary every time someone denies your child inclusion, every time judging eyes fall on you in church or the library or a restaurant, even those times when someone tells you what a superlative specimen of parenting you are or how worthy you are of blessings. In all these scenarios, it is clear that there is an us and a them, and you are not the us. And even if you consider the us-es a bunch of stuck-up entitled losers, it hurts to be a them.

You'd think we'd find some solidarity with other special-needs parents, our partners in them-ness. And yet ... human nature, it is hard to overcome. Because even within our fellowship of outcasts, we still draw lines. I see the lines forming every time someone whose child has issues takes pains to point out that this kid is bright (not, you know, like those kid with intellectual disabilities, God bless them). I saw the line running through my son's first-grade self-contained special-education class when one mother huffed at me that her son didn't belong in a classroom with my son. There was an us there, but my boy and I were not on that side of the line. I saw the line running through the posts of the e-mail support group for parents of kids adopted from Russia that I belonged to in my early days of raising my kids -- between the parents of kids with medical problems and the parents of kids with mental-health problems, or the parents of kids with mild behavioral problems and the parents of kids with severe behavioral problems. The judgment was quick and the claiming of malicious intent was quicker. Even within a special-needs community, we get out our pieces of chalk and draw our lines between those who understand and those who will not get it, or those who have real problems and those who only think they do, or those who know how to parent and those who are creating their children's problems -- every line empowering to some and alienating to others.

I thought about this line-drawing again when reading the responses from members of the autism community regarding allegations that the Sandy Hook shooter had Asperger syndrome. On the one hand, the response was an eloquent refutation of society's tendency to draw lines -- well, he had Asperger syndrome, he's not like us, all those people with autism are dangerous. On the other hand, it struck me how many of those responses took pains to point out that "autism is not a mental illness." Which is ... drawing a line, no? Saying, if unintentionally, "Don't group us with them." Surely it's no more okay to group all people with mental illness into a "might shoot you, they're crazy!" pile, but many of those who wrote about this issue were careful to make it specifically about autism, because that's their side of the line. Can you really blame people for drawing lines when you're busily drawing your own?

Perhaps a resolution to consider for 2013 is to pick a disability issue on the other side of a line from you to champion. Rebut nasty comments about kids with food allergies even if that's not your child's thing. Tell people to stop using the R-word even if your child doesn't have an intellectual disability. Advocate for inclusion for kids with different special needs than yours. If we can't blur those lines between us, we're never going to be able to get the folks who see us as one big them to do it.

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About My Family

My husband and I adopted two children from Russia in 1994: a 4.5-year-old girl with language delays and a 21-month-old boy with fetal alcohol effects. They're 26 and 23 now, and we're all surviving nicely.

Expand Your Advocacy

50 Ways to Support Your Child's Special Education looks at all those things you can do outside of those annual IEP meetings to promote success -- from getting a better start in the morning to helping with homework to communicating with the school. Parents have the power to make a difference, and I've got some great ideas on how to do that. Ask for the book at your local bookstore, or buy it online from Amazon or Barnes & Noble.